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Lucy balances heart with a full life

Local tyke carries a heavy medical load

Six-year-old Lucy Bell giggles quietly while reading from her favorite book, 'No More Cookies' by Paeony Lewis on a small sofa in her bedroom.

The noise level escalates when her younger brother and sister storm her room and start jumping on the bed. Lucy joins, tapping her brother on the shoulder playfully before they both fall onto the pink comforter.

Lucy plays for a second but knows that she needs to take it easy this week.

On Friday, the Our Lady of the Lake kindergartner from West Linn had heart prodecure at Legacy Emanuel Children's Hospital to increase the organ's blood flow.

Lucy has been in her fair share of hospital rooms in her short life, though many she may not remember.

'At first she wanted to pretend like we were staying in a hotel because we all stayed over,' said her mother, Molly Bell. 'But that didn't last long.'

Lucy had 14 surgeries before the age of 2 for congenital heart defects.

One in 100 children in the U.S., like Lucy, are born with CHD's each year - the No. 1 birth defect and leading cause of related deaths.

It's more common than cancer.

But on this particular Monday - while playing in her bedroom adorned with pictures of Disney's Miley Cyrus and the cast of High School Musical - Lucy acts like every other goofy kid home from a day of school.

'It was OK,' Lucy said of the procedure. 'I feel the same.'

But, according to her doctors, her heart has never felt so relieved.

Balancing her heart

During Friday's cardiac catheterization procedure a thin plastic tube was inserted into a vein near where Lucy's leg meets her pelvis. The tube was guided toward her heart using an X-ray machine. Dye was injected through the catheter so images of her heart were visible.

Before, Lucy's left pulmonary artery was half the size of her right pulmonary artery - causing the right side of her heart to work extra hard to overcompensate for the weakened left side.

Like a partially kinked garden hose, this narrowed artery needed a wire mesh tube called a stent to help tent it open so blood can pass through the vessel and to her lungs more easily.

If the narrowed artery was not fixed, 'over time it can give heart rhythm problems or heart failure,' said Dr. James P. Kyser, a pediatric cardiologist who performed her 2 ½ hour procedure.

The pulmonary valve - the tube between the right side of her heart and the blood vessels leading to the lungs - also needed to be enlarged on Friday to decrease pressure in the heart.

Lucy's heart has been a tricky situation since birth.

Lucy was born with Tetraology of Fallot and had an isolated left pulmonary artery in her heart, meaning this artery wasn't attached properly and had to be surgically fixed when she was younger. As a result of the surgery, scar tissue built up in the area, causing her left pulmonary artery to not grow as well as her right, said Dr. Kyser.

Tetralogy of Fallot - sometimes referred to at TET - means that at birth Lucy had less blood flow to the lungs, low levels of oxygen in the blood and the mixing of oxygen-rich blood cells with oxygen poor blue blood cells within her heart.

With Lucy, these complications caused cyanosis, a condition when a child becomes a 'blue baby,' with skin, fingertips and lips of a bluish tint. Once, when a passageway from her heart to her lung closed, she went into cardiac arrest and her cardiologist manually pumped her heart for 30 minutes.

'She went to the hospital at 10 days old, and she didn't come out for a few months,' Bell said.

Bell is part of a support group called Northwest Families with Heart and organizes local events through the Children's Heart Foundation.

'No one understands the anxiety of having 'heart child' better than another 'heart parent,'' Bell said.

Big group with big hearts

Lake Oswego resident Heather Helmy's 4-year-old son Gavyn was born with a complex CHD and had open heart surgery when only a few weeks old.

Now, Gavyn is, 'the picture of health,' Helmy said.

Helmy is president of the CHF's Oregon Chapter and met Bell while organizing a fund-raising event.

The national organization was formed in 1996 to fund congenital heart defect research. Helmy said that the CHF has funded 30 research projects for $2.5 million, but they need more funds.

'With their shirts on, these children appear like any other child their age, and even those who are the most compromised do everything they can do to keep up with their peers,' Helmy said.

While CHD's aren't physically noticeable in day-to-day activities, sometimes the defects come up in conversation.

Both Bell and Helmy met Kelly Aicher, store manager at the Bike Gallery in Lake Oswego, when they were shopping for new bikes.

They also found out that the 38-year-old Aicher is a CHD survivor with TET, now serving on the CHF-OC board.

'I'd say there's three categories of defects. There's difficult, more difficult and extreme. And TET is in the middle category,' Aicher said.

Aicher said the advancements in the medical field fascinate him. He said the mortality rate for people born with CHD's went down significantly in the 1970s.

'A lot of things they can do now without opening the chest,' he said. 'The more I get involved, the more passionate about this cause I become.'

Aicher rides his bike often and has run a marathon.

'It is so inspiring to meet a healthy and fit adult,' Bell said.

Many children aren't as lucky as Aicher.

'Nearly twice as many children die each year from congenital heart defects than from all forms of childhood cancer combined and yet pediatric cancer research receives five times more funding,' Bell said.

More than 50 percent of all children born with CHD will require at least one invasive surgery in their lifetime. Twenty percent of these children will not survive their first year of life, Helmy said.

A year ago, Lucy met Gov. Ted Kulongoski when he declared a week in February as Congenital Heart Defect Awareness Week in Oregon.

'Lucy is so well liked by everyone she meets and can also be an inspiration to other families that have sick or healthy children,' Bell said.

Bell said that the Children's Heart Foundation is the only organization exclusively focused on funding the most promising research anywhere in the world to diagnose, treat and prevent congenital heart defect.